I'm Not Cured Yet

By Thomas DeLorenzo

December 29, 2010

On December 14, 2010, my inbox was inundated with the news of the "Berlin Cure." My friends without HIV who, thankfully, have no reason to follow HIV-related discoveries as closely as I do, were all excited about this news. They were taken aback by my lack of enthusiasm. I had many reasons to hold back my joy. Some were purely scientific; some were personal.

One personal reason was very simple. I was around during the first supposed "cure." In 1986 the media was ablaze with a "cure" for HIV. It was a drug sitting on a shelf for many years that was originally designed to treat cancer, but it was not very effective. That drug was AZT. The years of AZT monotherapy began, causing much more harm than good -- but what did we know then? We were throwing anything we could at this fire and any success, no matter how small, was still a success. AZT provided promise but did not give us the silver bullet we had hoped for.

But it was a beginning.

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The "cure" trumpet sounded again in 1996 with the introduction of protease inhibitors and Highly Active Antiretroviral Therapies were born.

That was nearly 15 years ago and while the epidemic became a "chronic manageable" condition, the need for a cure is greater than ever.

However, I am not quite ready to bring out my trumpet just yet.

First, one man a cure does not make. In order to really know it's a "cure" we need to have studies. Studies are made up of many individuals, from a variety of backgrounds (ideally), and take years to prove. This was one man who accidentally hit on the "cure" when he was originally on the road to treating his leukemia. Yes, I know some of the greatest discoveries of man have been made while on the same accidental road. However, I don't think we can start screaming from the hills just yet. This is a beginning. A promising one, but only a beginning.

Jay Levy, M.D., said it best just in the title of his article in the New England Journal of Medicine on February 12, 2009. The article was called "Not an HIV Cure, but Encouraging New Directions." Levy goes on to say "the case could pave the way for innovative approaches that provide long-lasting viral control with limited toxicities for persons with HIV infection."

One of the other keys to this discovery is the location. The patient was an American living in Germany. Had he been an American living in the US, he would have not received such long-term, high-cost therapy. I am sure his insurance company would have cut him off long ago. I am definitely sure Medicare would have fought to approve the first lifesaving treatment and would have never considered the second one, the very one that created this new media frenzy.

The true discovery here is the fact that it happened in a country with much more generous medical benefits than usually found in the US. The two keys to HIV -- both the "initial discovery" and the "cure" -- did not occur in the US. The "initial discovery" took place in France and the "cure" was in Germany. Both of these countries have a National Health Program that offers both hope and treatments to those in need. Drug companies and their powerful lobbying groups don't get the same say in health policy as they do in the US. Research is actually performed for research's sake -- not for advancement of a specific drug. Research in other countries still believes in curiosity and the human condition.

What motivation do the drug companies have in "curing" us? None. They are far better off having us linger on long-term medications, teasing us with the latest pill with fewer side effects and less dosages and offering more pharmacological "solutions" for the side effects.

Writer and Futurist Alvin Toffler believed that the "new nations" would be corporations and they would rule the land. Allegiances would no longer be to people's country but instead be replaced by corporations. Huge, multi-national corporations, financial and insurance companies, and media giants set the boundaries for our lives. I can see the language being written into health insurance policies across America, specifically removing this incredibly expensive treatment from their list, without naming it or naming HIV in the process. To remove a treatment for a specific disease would violate the Americans with Disabilities Act and a variety of other Federal regulations. But with a few creative words, the spirit of the law is soundly defeated.

Another recent government action prevents me from shouting from rooftops. It is the lack of funding for the treatments we currently have. This year, nearly 5,000 Americans will go without their lifesaving HIV drugs due to lack of funding. The Obama Administration was asked for $125 million in emergency AIDS Drug Assistance Program funding -- a mere fraction of the rest of the budget -- but we only received $25 million, leaving thousands of individuals stranded.

No one marched in the streets on our behalf. No one held three-day walks raising funds and awareness for us. The cries of the disenfranchised fell on deaf ears.

People don't care about us now because the Bush Administration successfully rebranded the disease as a heterosexual African problem. The domestic agenda was pushed off the screen and the global AIDS fight was the only one worth fighting. Nowhere is this more evident than in the (Red) campaign: You became a hero for donating funds to Africa but you are a freak if you actually help your fellow man down the street with AIDS.

This was evidenced in the documentary on Showtime -- The Other City. It talked about Washington, D.C., and its HIV problem. D.C. currently has a 3 percent infection rate -- 1 percent is considered epidemic; 3 percent is beyond comprehension. It is devastation on a human scale like we haven't seen in generations. D.C. has a health problem that is frequently seen in third-world countries and, yet, it is our nation's capital.

Still, there is no public outcry.

Yes, I am hopeful that this is a new path and could provide an improved treatment for many people like myself living with HIV/AIDS. However, I do not think the road will be an easy one. I can only hope that others will realize that the need for such treatments exists in their own backyard and will stand up and do something. I also hope that the stigma about people living with HIV/AIDS that exists in 2010 will begin to diminish in 2011. A treatment can cure, can cause people to live longer, but cannot change what exists in others' minds.

Until then, I am looking for a way to become a citizen of the European Union.

Comment by: Jessica S,
(Naples, FL)
Thu., May. 26, 2011 at 5:33 pm EDT
There appears to be a cure for AIDS. It's similar to the cure for certain leukemias where the marrow cells of a recipient are totally removed, and a transplant is given from a donor with matching cells. To cure AIDS, the donor cells must include mutated cells that are homozygous for HIV resistance. When a transplant is received from such a donor (1 or 2% of the population) the recipient acquires the donor's HIV resistance.

So, why then is this not considered a cure? Surely its possible to identify those donors with the resistant cells, extract some and grow them in the laboratory until there are enough to transplant to all who need them?

Is it because the cure doesn't come in pill form? Is it too expensive to provide such treatment to all those infected with HIV? Is it because the cure is so much harder to effect than it is to catch the disease in the first place?

Why don't we start by calling this straight - a cure already exists but it is just not ready to be distributed to all those who need it?

Does every leukemia patient get the transplant needed to cure his/her leukemia? You can't say there is no cure for leukemia if one exists. You can say in this country there is a cure for leukemia but it is only available to the few people who have sufficient money or insurance to pay for the treatment necessary for the cure.

This statement about the cure for leukemia seems to fit the AIDS situation perfectly. Same type of cure, same amount of trouble and cost, same type of people will be treated - only those with money or insurance to pay for the expense of a cure that takes more than a few doses of pills to be realized.

Neither cure is cost efficient, so don't expect to find it for sale over the counter or in your local pharmacy in the near future. Don't expect to read about it in your magazines either. For all intents and purposes no cure exists until the drug companies make one available.

Comment by: "Jane"
(USA)
Tue., Jan. 25, 2011 at 3:07 pm EST
Thom,
Thanks for your response. It warms my heart. I know that we with HIV/AIDS are never "gross", but still couldn't out myself when I heard someone make that rude comment about a man who was open about his health status. I know I'm a lucky woman in many ways. I haven't let this virus win. I even found a wonderful boyfriend on poz.com last year. Just as you do, I will continue to live my life with grace and dignity. Thanks so very much for your wisdom and support.

Comment by: roma
(chicago)
Thu., Jan. 6, 2011 at 4:04 pm EST
With no doubt i would rather have HIV than what i have, last year i thought i had gotten HIV after a broken condom incident and after having many HIV like symptoms, it turns out that i didn't get HIV i got a retrovirus called XMRV, i have brain demyelination, pain in my liver,spleen,pancreas,heart,shortness of breath, multiple eruptive dermatofibromas, major GI problems, major cognitive problems and exrteme fatigue, white thrush and a swollen tongue with teethmarks around it, there was no such thing as asymptomatic stage of disease, i got sick 4 weeks after the incident and i have been sick ever since, the CDC has known there's another HIV like retrovirus out there since the early 1980s and has done a damn well job in hiding it and keeping it under the rug.. i know of a lot of people who also as me thought they had gotten HIV after unprotected sex and kept testing negative for it for many months even years and they kept testing because of all the HIV like symptoms and it turns out that a lot of them have tested positive for this XMRV and the sad things is that a lot of them have donated blood since becoming sick because they thought the Red Cross screens for every disease out there,so i know for a fact that the blood supply it's been contaminated.

I have been tested and re-tested for every other disease out there that mimics HIV,have gotten multiple STDs screenings and has all been negative except for XMRV this one was positive, recently this virus was linked to ME/CFS and the CDC and the UK health officials tried to smear this breakthrough with accusations of contamination when they haven't even tried to replicate the original study that found XMRV, i am so frustrated and sometimes think about ending my life because unlike people with HIV i have no treatment and nothing that stops the progression of the disease.The CDC denied HIV existed when it was discovered, their making the same mistake all over again, a few million Americans may be infected study suggest

Comment by: Doug Smith
(Hamilton Ontario)
Thu., Jan. 6, 2011 at 8:35 pm ESTRoma;
Thanks for sharing. Many readers will be unfamiliar with Xenotropic murine leukemia virus-related virus [XMRV]. XMRV is a gamma-retrovirus that belongs to the same family as HIV but is much more closely related to a group of viruses that cause cancers such as leukemia. XMRV has also been associated with prostate cancer & chronic fatigue syndrome.
If you compare HIV and XMRV you'll find that XMRV has limited genetic diversity (has less capacity to develop drug-resistant mutations). This is good news because there are effective treatments for XMRV. Researchers at both U of Utah & Emory University tested 45 substances (compounds), including 28 FDA approved drugs against XMRV. The good news is that 4 anti-viral drugs used to treat HIV are also active against XMRV. The 4 drugs are: the integrase inhibitor Raltegravir/ Isentress; Tenofovir; AZT / Retrovir; and an experimental integrase inhibitor (named but not branded). It seems that because drug-resistance is not an issue, one can effectively attack XMRV with only 2 of the 4 drugs (saving $$$ and liver cells) instead of needing all 4 drugs. I have first-hand experience with each of these meds, and encourage you to seek out treatment access. One of the first places to seek care might be a Special-Immunology Clinic at the mearest University with a Medical programme. HIV-doctors / specialists are (on the whole) the most dedicated group of professionals in the health-care system. Unlike other specialists, HIV doctors don't usually abandon their patients -- even when all the options have run out. Other specialists abandon patients all the time.
Please take care of yourself, Roma.

Comment by: Roma
(Chicago)
Fri., Jan. 7, 2011 at 1:18 pm ESTHey Doug Smith thank you for your reply. I have been seeing an ME/CFS specialist and he told me he could prescribe me HIV meds if i wanted to which i do, the problem is that it would most likely be out of pocket expense because nothing has been approved for XMRV yet by the FDA, but maybe just maybe like you said i could try only two HIV meds and maybe that will help me and i could probably afford it. I have been reading blogs of people including some doctors who have ME/CFS patients and have been trying HIV meds for a few months and it's remarkable how well they are responding and how well they are getting slowly but getting better, specially since some of them have been sick for so many years, thanks a lot for the info.. i really feel a lot of sympathy for people with HIV i really do, i too have experienced some infections and OIs and i can assure you my life is a daily struggle i know this site is an HIV site but i wish they would have some kind of info about XMRV as well because many of the worried wells that are here for months and months (i was one of them)and keep testing negative for HIV could possibly be infected with XMRV and easily be spreading it around thinking they are fine.

Comment by: "Jane"
(USA)
Wed., Jan. 5, 2011 at 2:11 pm EST
Mr. DeLorenzo...
You have expressed with accuracy my personal sentiments about the "cure" and the mind-blowing lack of concern for those of us living with HIV in the United States. I am grateful that my body has responded so well to meds since my diagnosis in 2003. But my small victory over the virus was put in check when a cold, clammy Dr. told me that she pulled one of her patients off of the same meds I take because his liver couldn't take much more. I'm thankful that ADAP covers meds that would otherwise cost over $1800 for one months supply. But was filled with fear after reading that hundreds of people are losing ADAP and being pushed onto a waiting list.
I live my life as a normal person until I hear someone say (not knowing my status) "that guy has AIDS... gross". I go on and live a happy, normal life until I'm reminded I am different... then a few moments later, I push the scary secret to the back of my mind and show the world my wonderful self. What else can I do?

Comment by: thomas delorenzo
(los angeles, ca)
Sun., Jan. 16, 2011 at 11:44 am ESTwe with HIV/AIDS are never gross -- we are beautiful people living our lives with grace and dignity. many days we struggle and fight for things that many people take for granted. But, in a very odd way, i firmly believe that AIDS has made me a better, more beautiful person. and if someone i meet doesnt see that then they dont belong anywhere near me. their loss. continue to share your wonderful self with the world, "jane". you have my support always. thom

Comment by: Carles
(Barcelona, Spain)
Mon., Jan. 3, 2011 at 7:55 am EST
Hey, as an EU citizen I love your last phrass, but wait as here we have some money problems...

Spending people one doesn't has is very easy, just put the credit card in a machine, press 4 numbers and it give you some bills, then you have to pay these bills as you can get more bills than money you earn, when just few people do it, it's a puntual problem, when many people do it, it's a big problem, when it becomes a culture, it's a catastrophe. And here we are!

If you want to live well, come to Europe and leave the US, the "land of the freedom", which freedom? the freedom to have weapons, etc... and as I read somewhere, the US constitution recognize the right to have weapons, and many other things, but does not recognize the right to have good health, as and argument against public healthcare.

So man, come to Europe, the only place I do not recommend you is UK as it's half way US and half way European heart more to the US than Europe on mind although closer to Europe than US physically.

The only thing that will tie you to the US when in Europe, are the big companies and NATO, but you know, you can go to Switzerland, which is in "cold financial war" with the US, and isn't a member of NATO, the biggest problem to be there is that you have to have a BIG wallet!!! Another option is to go to an European Union country with overseas territories like Cayman Islands, Netherland Antilles, French Polynesia, French Guayana, where I guess you will also have universal health system.

Comment by: James
(Edinburgh)
Sun., Jan. 9, 2011 at 1:23 pm ESTI must take issue with this comment advising someone not to come to the UK.

I live in Edinburgh and have received the best care and support possible from the National Health Care. I have access to the best and most up-to-date treatments and I don't need any type of medical insurance to pay for it.

I haven't been denied anything and my treatment and care is second to none. I'm a patient of an innvoative and world class hospital - The Royal Infirmary of Edinburgh.

The care given by the National Health Service is second to none. Please do not make such sweeping statements about a countries healthcare system, that you clearly know very little about.

I would not want to be treated anywhere else!

Comment by: thomas delorenzo
(los angeles, ca)
Sun., Jan. 16, 2011 at 11:45 am ESTi know things are in a bit of a turmoil in the EU these days. But the attitude has always been, for lack of a better term, more mature, more developed than that of the US. The UK, the country i am most familiar with because i studied there in 1988, has always been light years ahead of dealing with people with HIV/AIDS. Gay people, not so, but people with diseases they always ALWAYS gave a helping hand.

Comment by: thomas delorenzo
(los angeles, ca)
Sun., Jan. 16, 2011 at 11:48 am ESTjames -- i LOVE edinburgh. my former partner was from there -- he died in 1995. and we ALWAYS received the best care from the doctors, nurses and ALL health care professionals in Edinburgh. the Royal Infirmary always was there to lend ME a helping hand and even offered to check me out in case i was in need of anything due to the stress of David's final days. they are incredible there and you are VERY LUCKY.

Comment by: Stevie Wilson
(Los Angeles, CA)
Thu., Dec. 30, 2010 at 8:30 pm EST
One of the most salient points here is that most of the research, trials and health care about these "wonder drugs" is that they are NOT from the US and the almighty pharmaceutical industry has yet to step up to the plate to help dig into finding a cure. Even more relevant is that whether or not there is a cure or improved therapy from US pharma companies is that the US health insurance industry is sure to put every road block and obstacle in the way of paying for such long term care or even the initial therapy.
The US health care system "bites" the hand that feeds it and if we were to step away from Anthem/Wellpoint CEO's private jet use for personal trips and her extra bonuses and multi-million dollar salary-- maybe -- just maybe someone would take notice. Having testified before state legislators about other health care issues, I find that Thom's editorial is truly on the money-- and Thom you might see a longer response on my blog

Comment by: Renee Wilson
(Bakersfield, CA)
Thu., Dec. 30, 2010 at 7:18 pm EST
If helping another human being makes me a freak, then I freak I be. I could no sooner turn my back on a stranger in need than I could on one of my own children. Through helping people with HIV/AIDS, I have found my humanity again. I feel so fortunate to know so many brave men and women. I continue to pray for a cure, but until there is one, I will be there for others when I am needed.

Comment by: thomas delorenzo
(los angeles, ca)
Sun., Jan. 16, 2011 at 11:49 am ESTrenee - please email me -- through my email address on this site -- and i want to hear more about your work with people with AIDS in Bakersfield. I have fond memories of Bakersfield. It is quite charming -- and Dewar's is the BEST. (the ice cream place in case you are unfamiliar)

Comment by: Jerry
(Saint Petersburg FL)
Thu., Dec. 30, 2010 at 7:13 pm EST
I like your artical and it hits the points straight on. I like it when people tell the truth about this horrible disease that really isn't just a chronic managable disease without medicine to back that up.

Comment by: Michael
(New Orleans, LA )
Thu., Dec. 30, 2010 at 7:00 pm EST
Funny you talked about becoming citizen of the European Union. I just found out I'm HIV positive on 29 Nov. 2010. I am currently getting my Italian Citizenship through "jure sanguinis". Do some research you might be surprised what you find. I'll be moving there shortly.

Comment by: thomas delorenzo
(los angeles)
Sun., Jan. 16, 2011 at 11:50 am ESTplease keep me posted. i know about the very process you are going through -- it takes work but its doable. where are you in the process?

I remember the days when "AIDS" was "God's curse on men for abhorrent behavior", the "GAY DISEASE", the "Grid", the "gay cancer".

I've been "POZ" since May, 2007. Since then, I've been on the front lines of the fight for treatment and care because our Ca. Gov. Schwarzenegger, has deemed it both necessary and efficient in assisting to balance the state budget that's woefully upside down. Basically, our lives are the equity or "chips", if you will, that the governor wants to cash in, in order to balance the states over burdened budget. This is not only criminal, it's inhuman on the level of the Third Reich. NEVER in my wildest nightmares did I imagine that such an atrocity would be allowed in America!

To further the point, under "Obama-Care" costs for so called "end of life" health care can (and have begun to be) rationed. (see cancer treatment and dementia under new health care)

Recent news reports have indicated that some cancer patients have already begun to be denied medicine because of cost containment, whereby the benefit of saving a life for 2,3 or 5 years is outweighed by the need to contain costs. i.e.: rationing! Furthermore, people with dementia CAN be denied treatment because adherence to treatment cannot be guaranteed.

With the baby boomers now entering retirement, medical costs will soar! Already 80% of medical costs are spent on elderly and end of life treatment. HIV treatment is exceedingly expensive. Without financial subsidies like Ryan White, we will no longer be able to access the medicines we depend on for our lives.

It's time to demand more from government and pharma. Both have a moral duty to find a cure. With a bleak financial future, where does that leave a CURE for HIV? More importantly, where does that leave those of us living with HIV? IF indeed this man has been cured, then fast track it! Time is not on our side.

Comment by: Mark
(Sonoma County, CA)
Thu., Dec. 30, 2010 at 4:41 pm EST
Thomas,
I remember all the supposed 'cures' you mention, and a few more, and I remember getting calls and e-mails from friends and family (I'm fortunate to have both) regarding them. You also mention they are less informed than you. You do a service by putting the hype in perspective, and as a HIV/AIDS patient you speak with unique authority. While the Berlin patient story sounded like a breakthrough, a little more digging showed it was a one-time event. Yes, America's health care non-system is AWFUL- horrendously inefficient in every measurable way and ineffective by almost any measure; about the only area where it tops the world is in executive and upper-management pay.

Comment by: thomas delorenzo
(los angeles, ca)
Sun., Jan. 16, 2011 at 11:51 am ESTexactly -- we lead the world in CEO pay but not in basic human pay.

Comment by: mack470
(jersey city)
Thu., Dec. 30, 2010 at 3:40 pm EST
I agree with you 100%.....I saw a post on FB from The Grio professing "the cure" and if it would be avlble to low income HIVers.And the media was all abuzz about "the cure",I've had the virus for 10yrs and have come to take these with a grain of salt.

Comment by: thomas delorenzo
(los angeles, ca)
Sun., Jan. 16, 2011 at 11:52 am ESTi hope someday you wont need that grain of salt -- that someday we can all celebrate and laugh at what we have all gone through. i pray for that day to come soon.

Comment by: Doug Smith
(Hamilton Ontario)
Thu., Dec. 30, 2010 at 12:35 am EST
First of all, I'm glad for Mr. Brown's good fortune. It does appear that he has indeed been cured. Of course, it should be remembered that the Germans cautiously used the word 'suggests' and rightly did not state that they have proven to cure Mr Brown. It is possible that the virus is laying dormant very deep or is very weakened.

But this case is (at best) something of an anomaly -- the results have not been replicated in any other lab on the planet. On that basis alone there is no "cure" to celebrate. Still, if they have actually eradicated HIV, it raises some exciting possibilities.

Also, it should be noted that bone marrow transplants (which is what we're talking about here) carry high risks -- by most accounts the risk of death is 30%. Add to this, the complications of HIV-disease progression. Then there is the challenge of finding bone marrow donors with the delta 32 mutation (rare enough) who are willing to consent to donate. And there is (as you have pointed out) the matter of cost. At $300,000 US, this is not an accessible treatment for millions of sub-Saharan HIV-positive people.

Thomas, I agree that apathy & indifference have infected (and weakened) the American spirit.

The cruel reality is that "where there is no vision the people perish".

Comment by: Doug Smith
(Hamilton Ontario)
Fri., Dec. 31, 2010 at 9:16 am ESTIn the interest of clarity, I should have written "the results have not been replicated in any other PERSON on the planet".

Comment by: thomas delorenzo
(los angeles, ca)
Sun., Jan. 16, 2011 at 11:53 am ESThow do we get rid of the apathy and indifference? i wonder that all the time.

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Until just a few years ago, Thomas DeLorenzo never would have believed he could become an HIV/AIDS activist. Before he was "officially" diagnosed with HIV in 2001 -- with 60 T cells and a viral load of 300,000 -- DeLorenzo had been living in denial. And until 2006, he was too busy dealing with the many side effects of his own HIV meds to think about helping anyone else. Then he and his doctors finally figured out the perfect med combo -- and, finally, DeLorenzo felt that he actually had a future.

DeLorenzo lives in Los Angeles with his partner and is currently attending law school at Southwestern University School of Law. His career goals include making sure all Americans have access to adequate and affordable health care. Prior to law school, DeLorenzo worked as a publicist in the entertainment industry, representing many award-winning celebrities.

In 2006, The New York Times named him an Unsung Hero in the Fight Against HIV/AIDS for his Christmas Goody Bag Project for the residents of the San Antonio AIDS Foundation Hospice. In 2008, DeLorenzo was the San Antonio AIDS Foundation's Angel of the Year. DeLorenzo's alma mater, Hofstra University, named him Alumnus of the Month in August 2009 for his work on behalf of people living with HIV/AIDS. DeLorenzo was recently appointed to the City of West Hollywood's Disabilities Advisory Board.

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